Dear Ellie-May

Dear Ellie-May

It is perfectly fair to feel hard done by right now. Only a little over 5 weeks ago you were minding your own business, living life. In fact, that last normal day was very much that: normal. Working overtime to help out - and because a wedding is always fun to be around even if your attention is to be focused on the smaller guests. You may not have been able to catch up on the telly you planned, but you made a new friend - a fellow babysitter, sharing the empty house to the back drop of a live band and excited partying guests just beyond the window. You battled with the decision of whether to abandon your new friend or not and finally accepted it was necessary knowing the early hour you may be awoken by your adorable roommate, currently sweetly snuggled in his cot. You headed to bed, a few minutes of reading ahead of you, and fell asleep, waking on and off to very carefully reposition yourself noiselessly.

And then that final wake up...the identification of that slightly too familiar discomfort somewhere in the centre of the abdomen...really? Could it be the usual? You felt fine as you drifted off, you felt well enough for the 2 pasta-based meals you'd made yourself the lunch and dinner time before. You even took advantage of the beauty which is the ice cream drawer, filled to the brim with tubs and packets of dessert delight. At 10pm...was that what did it?

There's no use questioning it all now. The point is that 24 hours later, you were on a trolley in A&E. After a gruelling morning spent navigating your way home via taxi, train and Uber, while your insides felt like tiny men with pickaxes taking to your internal organs. After what momentarily felt like a relieving bubble bath that has been known, in the past, to carry you through an episode. After discovering you couldn't sit, lie or, God forbid, move, anywhere comfortable. A call to 111. A returned call from an out of hours GP. Advice to head to the hospital.

This is where it really began. Told to leave you at the entrance, Steve was sent home and you forced to hunch, tears streaming down your face, as you were asked question after question by the receptionist, to register before you could be seen by a medical professional. Luckily, after that, they did move a little faster. Your extreme discomfort clearly evident, you were triaged relatively rapidly. "Tell me a bit about your medical history and what's going on today,," Says the nurse who, to all intents and purposes, is just figuring out who to give you to. Between heavy breathing and the shivers, your sobs and the spasms of pain, you run through your history, making it clear this isn't unusual for you and you're pretty sure you know what it is and what you need.

Shortly following the insertion of the NG Tube

Several hours later, it is clear you do indeed know what is wrong. Although, in this instance, it is far worse than you could have imagined. They tell you early on that what they're seeing on the scans is worrying and it's possible an operation will be needed but you are able to distract them with the story that your previous medical adventures tell. That is, until 2 am, when back the junior surgeon comes, surrounded by friends of indeterminate status, to tell you they could wait no more! White blood cells are mentioned. The bowel is twisted...not once, not twice but three times. Infection is inevitable. Blood supply is hindered. Waiting is not an option. The choice is yours. But if you choose wrong there's serious repercussions.  Are these men in scrubs simply being knife-happy? Its 2am. You're tired but unable to sleep. You're in pain and you're alone. You want someone to tell you what to do. You call mum. "They want to operate". Well, you've been here before. The same questions as ever: can't they wait and just see what happens by the morning? Is it absolutely necessary? Are they SURE they can't wait just a few more hours? Of course, it's your choice. It's your body. You ask to meet the surgeon who will do it. The one who has supposedly "heard" about your scans and wants to intervene. You, understandably, want to meet this man with the knife. This man who holds the future of your bowel in the palm of his hands...almost literally. The young surgeon rolls his eyes as mum - over 40 miles away but clear as a bell over your Samsung phone - and you, foggy with pain, beg (in your case) and demand (in mums) to talk to this boss man face to face.

Half an hour later, there he was. The kind, smiling face of a man who stroked your hand and spoke softly. He explained the situation simply: leaving it could be life-changing. There wasn't even the need for mum to use her go-to question as Mr M. Reassured you himself that "if it were my daughter, I'd be doing the surgery". What's more, he went on, he would not be here, at the hospital, at 2am, out of the comfort of his own bed at home, did he not feel it necessary. So that clinched the deal.

Risks hazily understood and paperwork signed, what followed was the only really enjoyable bit of the whole affair: the anesthesiologists. Kind faces joked that this first drug would make you feel like you'd had a triple G&T. Wonderful. This second one would do something else...then the mask...

"Hello Ellie. It all went well"

Fade out again. Waking under a warm blanket in a large room. An empty room. Just you and a man pottering around. He gave you another blanket and told you you'd be moved soon. You couldn’t feel your legs...you couldn’t feel anything. It was blissful. You dozed some more. Eventually, via a brief pit-stop elsewhere, you were introduced to your home for the next 10 days. A room with a view: London’s skyline in the distance beyond the foreground of Archway, North London. The shard stood tall in the distance. A beautiful view for those who could move sufficiently to see out of the large windows lining the wall feet from the bed. Had it been a hotel room, one probably would have been pretty pleased with what they got. For you, the outdoor beauty mocking as you lay inside, the numbness gradually fading to be replaced by indescribable discomfort and pain. You genuinely can’t describe it because you've probably blocked it out. Every movement was defined by the reminder that you'd been sliced open, right down the middle.

I made it to the chair

From your bed, you couldn’t even see the door to the ward reception outside. You couldn’t indicate to a passing nurse that you could no longer reach the buzzer or ask “When am I due more pain relief?”. Occasionally, one would wander in, hand you a syringe of oral morphine, or attach a new drip of Paracetamol or potassium rich fluids, and then leave again. Nothing seemed to dull the pain really though. The nights were the worst: right from the start, you dreaded the drawing in of the days and the very gradual darkening of the sky. You can only thank your lucky stars it was summer and the day only ended as the time hit double digits again: 2200 and the sky still light. Even then, you dreaded the quietening of the ward activities, the departure of the day staff. You didn’t have the energy to read or distract yourself, no way to make time run faster. Instead, you’d lie there, on your back, tube scratching at the back of your throat, unable to turn your head comfortably one way or the other. You’d watch the clock ticking directly ahead on the wall opposite; 23:09, 23:10. The minute hand seemingly moved slower and slower with every second. Maybe you’d doze…23:29….so it continued. Watching the sun rise again. Another night of sleeplessness. At least the buzz of activity began early: Between 5-6am the first visit from a Health Care Assistant, arriving to take your blood pressure and pulse. To remind you, once again, that you were tachycardic, something consistently heard from seemingly every member of hospital staff since walking into A&E with a heart rate of close to 150bpm. By this point, it was nothing to write home about: 120? 105? That’s practically nothing.

“let me just put this on your other hand”

“I’m just going to put it on me…70bpm? Oh, so it’s not broken.”

“I think we’ll do an ECG”

108bpm...practically nothing for me

They were always normal. The ECG’s. Nothing of concern. Nothing of note except your body just ran slightly fast…Wouldn’t anyone's pulse be slightly fast too if they were in serious pain and had a cut right down the middle.

Through all this, not a doctor or surgeon in sight. Surgery: 06/06/22, your first visit from a doctor or surgeon: 08/06/22. Her first questions: “so, what pain relief have we got you on? Why are you so anxious about coughing? You’ve got a morphine pump, yes?” No. No you do not. “why not?”. You had been wondering the same yourself. After your last surgery, in 2015, you woke up in ICU with the pump already attached. You could recall the magic of being able to press that button every 5 minutes and the increasing numbness of your body as the morphine rushed to do its job and take control. Not this time.

“oral morphine? You’ve got a nasal-gastric tube…anything and everything you take orally comes back up. That oral morphine won’t have touched you”.

Well…that makes sense. Great. 2 days post major abdominal surgery and, essentially, You’d been receiving minimal pain relief.

“I won’t stand around making small talk. I’m going to get the pain management team onto this”. You could have cried when she walked in the room and introduced herself. Manage the pain! Hook you up! Take it away! Within half an hour, you had your button. Within an hour and the arrival of your sister, she exclaimed “I’ve never seen you high before”. Finally, things were on the up. 15:30 – Press, 15:35 – press, 15:40 – press. Well, this is great.

The magical Morphine button

The physio got you out of bed: teaching you how to avoid using your core, to raise the bed upright, lie on your side and swivel your legs. First, you just sat on the edge. Then gradually built the courage to move to the chair half a metre away. Day by day, the chair became your new place to sit. Much more comfortable than the plastic mattress-ed, backache-inducing bed.

You were taught how to breathe and how to cough. You were encouraged to exercise your lungs every hour: 3 breathes in and out, in and out, in and out. In, hold, out, in, hold, out. In, pretend-to-fog-a-mirror, out. Repeat. Cough. It turns out, after all that breathing and coughing malarkey that your lungs still weren’t happy. An infection was identified and antibiotics introduced. You even got a bonus face accessory in the form of an oxygen tube. Another toy to drag around when You moved from bed to chair and back again.

Then the joyous day came: Saturday 11^th June. The nasal tube came out. The catheter removed. It almost felt like freedom. “free fluids” your board stated in dark blue marker. A cup of orange juice, water, water, water, tea? Yes please!

Notice anything missing from your face?

That didn’t last long though. A discomfort began to sit with you again, something indescribable. You couldn’t figure it out but you lay all night unable to remove it from somewhere inside. Unable to get comfortable and, again, watching the clock count down the minutes until just before 6am when you guessed youe dad would be awake. You sobbed on the phone, unable to clearly express the discomfort you felt. You sobbed to dad, to your cousin, to your sister, to your aunt, to your mum. A nurse readjusted your bed, lowering it entirely and tinkering with the support beneath your back and legs. Unbearable. You tried standing, you tried sitting. Nothing would ease the feeling inside. Until it did. All the fluids they’d confidently encouraged you to start on the day before, reintroducing themselves and informing you that the internal set-up still was slightly frozen in time. Nothing, as of yet, that you introduced to your body, was going to be dealt with, and must instead be removed through the way in which it came. The relief. A weight lifted off your chest: a weight of orange juice, water and tea.

Everyone took a step back.

You moved to a bay, a men’s bay, because your room was needed for someone else…then another side room where more people could finally pay attention to you as they passed.  Please can you leave the door open, you'd repeatedly ask. Your fairy godmother brought you dry shampoo and brushed your hair, your mum distracted you with stories from home. You began to listen to podcasts outloud on your phone and occasionally get an hour or 2 of sleep. You grew slightly more confident to look at the scar when a nurse would finally come to change the dressing. It wasn’t pretty. Certainly not neat. you’d have forgiven them if a small child had admitted to over-excitedly drawing it on with a pink or red marker. Without warning, a nurse pulled at your skin drawing 2 or 3 staples out. You squeezed mum’s hand and cried. You’ll never be able to forget that, not while you look in the mirror and see that wider, circular area of scarring, that’s still taking far longer than the rest to heal.

You began to drink again, and then to eat: “soft diet” the board above the bed said. Shephard’s pie? Don’t mind if you do. Finally, the last 8 days of no food are hitting that spot just in the middle of your tummy. The growling has reappeared. You’d missed it. Jelly? Not the best. Ice cream? Yes please. Then day 11 came round. Over the last few days, a change had occurred. Instead of lying in bed, in pain and exhausted, you sat out in the chair, crying with boredom, fed up of the discomfort of the cannula in your hand, declining the offer of pain relief because you didn't really feel the need. You wanted to go home.

Day 11. The doctors round brought with it the words you’d been dreaming of: “well then. What do you think about us getting you out of here?”.

That evening, a plastic bag of drugs and dressings at your side, the cannula removed, you slowly manoeuvred yourself to the chair, out of your hospital gown and into pyjamas, out of those tight, anti-clotting, green hospital socks and barefoot into your shoes. You gathered your bags of belongings, slowly drew yourself to your  - slightly hunched – fullness of height, and walked out of the hospital and into the light.

Ready to go home...for now

“If you have any symptoms, don’t hesitate at all to come back…” reassured the doctors to your departing back.

But that's for another day's letter.